I saw you in sept of last year. I live in Nebraska and have been having a very difficult time implementing your treatment suggestions as docs here are just unfamiliar with lipo-lymphedema. I would like more info on the RAD diet as described on Fat Disorders.Org. Can you point me in the right direction?
I provided more information on my website. Hope that helps.
Dr. Herbst I have been trying to contact your office about setting up an appointment. I am from out of town and have seen two different doctors but have had no help. I just went thru my fourth surgery and am becoming scared on what to do. If I can not step up an appointment, I was wondering if I could see a specialist that you may know in Michigan. Anything will help. Thank you.
Josh, I live in Michigan too and cannot seem to find any assistance. I was wondering if you ever found a doctor that can help with diagnosis and care? I'd appreciate any info. Hope you are well.
I have not seen this Dr., but found his name on another DD site. Kevin Hackshaw MD | Ohio State University Wexner Medical Center
I am 55, female and have several lipomas that range from the size of a kiwi to a grapefruit size. I had 5 large painful ones removed last year that were all near my joints. I'm now developing a small one on the back of my neck and it is causing stiffness and pain in neck, shoulders and my head. Next week I plan to undergo, on the advice of my spine and arthritis doctors, Bariatric surgery. I am 100 pounds overweight with very heavy legs and arms. Small chest and waist. Has anyone heard of this helping?
Laraine Zady: I am wondering if you had bariatric surgery and how you are doing. Many people with Dercum's disease have had bariatric surgery with good weight loss but the lipomas stay behind and can continue to be painful.
I am wondering if you had bariatric surgery and how you are doing. Many people with Dercum's disease have had bariatric surgery with good weight loss but the lipomas stay behind and can continue to be painful.
My sister , who has Dercums , had bariatric surgery three years ago . Extremely successfull . It had definitely relieved some if the pain and she says the Dercums is now tolerable . I am hoping for the same . I have just been diagnosed with Dercums disease . There may be more than the two of us in the family with this ,
Thank you for the blog, I will surely have close look at it. Please continue with regular updates.
my name is shayne owens and am 28 years old, i had my first lipoma when i was 17 and when i was 21 i had around 8 of them that i had noticed, and was told they were just lipomas and harmless, over the last year they have begun growin more rapidly from my stomach to chest my arms and legs, I am an average size male, and these things are taking over my body. i have no insurance right now and am having a hard time getting any help from any doctor other than they are painless lipomas, yet they cause me discomfort and pain. Will you see me as a cash cient?
I do take cash patients. Please call 619-543-6303.
I had my first lipoma removed in 2007. By 2009, I had noticed six more, that were extremely painful. Six months later, there were 20 more. In early 2010, I was diagnosed with DD type 2. I have steadily gotten worse over the last year. I now have over 300 lipomas, and possibly something called Intestinal Lipomatosis. I "somewhat" follow the RAD diet; I can only hold down one meal a day, I don't eat meat, but I do eat dairy, but only eat minimal processed foods, and I eat home grown vegetables. I also have CVID, so I don't eat at restaurants and have to be careful about what I eat, or I will get food poisoning.
But nothing seems to help. I find new lipomas almost everyday and am in extreme pain. I have lipomas from the top of my head and face, to the soles of my feet. I live in Texas, where the weather is wonky and humid and when it rains, I'm like a human barometer. I know when a storm is coming anywhere from a few hours to a day before it comes because I get excruciating pain in my lipomas that prevent me from functioning. The ones in my chest make me feel like I'm having a heart attack! Have you ever heard of the weather affecting the dercum's lipomas in such a way?
My doctors' are all working together to try to figure out a way to help me, but they have come to the end of their rope. I'm on disability, so I have no way to come to California to see you. Do you have any other natural suggestions, other than the RAD diet, that may help? I do a lot of research on herbs and essential oils, grasping at straws. I will try any suggestion you may give.
Thank you in advance.
It sounds like Lyme's disease may be pathogenically related to DD as people with both diseases can have painful responses to natural and manmade EMF/EMR, ie. stormy weather, full/new moons, wireless and digital technology. We should pay attention to our surroundings when we go through a painful flare to see if there is this correlation. I believe it may be pathogens in our bodies that are reacting in response to EMF/EMR and creating the painful lumps.
I have within the last few months had multiple lipomas appear on my lower back. I have all the symptoms of DD and would like to find a health care provider in the state of Alabama. Please send any information that you can as I do not have any resources to travel.
Jo, I also live in Alabama. Did you ever find a doctor to help you? In January 2015 a doc in Pell City diagnosed me, then I went to see Dr. H in July 2015. Any help locally would be appreciated.
Hello Dr. Herbst!
I have been batteling tick-borne diseases for many years now. Confirmed diagnoses of Lyme, Babesia, HME and Bartonella H. When my symptoms of Bart h. emerge, so do many painful lipomas. From what I have researched, it sounds very much like Dercums. My question to you is... have you linked Dercums to Bartonella H either in research or in patient histories???
Thank you so much for any replies.
Melanie, I am also wondering the same thing. Bartonella symptoms sound very similar to Dercums. How to tell the difference?
Hello Dr. Herbst,
I live in Delaware and cannot find a doctor here who has even heard of this let alone treat me. My doctor prescribed vicoprofen, which does not help at all with the pain. As an ER nurse, I have had several lipomas cut out and removed, yet grow back even bigger. I can barely get up in the morning and move anymore ( I am 42 yrs old). Can you recommend a doctor in the Baltimore or Philadelphia area?
Paula Apicella RN
If you find someone in Baltimore, please keep me in mind. I would love to connect with you and the physician as well. I am a CT Tech in DC. If I find a physician, I will definitely let you know.
Sheila, did you have any luck finding a doctor near Baltimore? I'm still looking and researching along with calling Baltimore and Philadelphia doctors but no luck as of yet!
Have u found anyone, I am near Baltimore, my md of 20yrs gave me the boot, "they shouldn't hurt"- ?!
Ron, my doctor had said the same thing, "you only have some lipomas, degenerative disc disease, a few bulging discs and you shouldn't be in as much pain as you claim". Whaaaaaatttt? Is he kidding me? I can't even move anymore! I must have hundreds of these so called lipomas that shouldn't hurt!!!
Email me @ RN_ER@hotmail.com
I have a wonderful geneticist in Baltimore that diagnosed my Dercum's disease. Her name is Claire Francomano and her specialty is connective tissue disorders, which are related to Dercum's. Unfortunately, her wait list is 18 months, but she is well worth the wait.
I wondered if you have a biopsy kit for mailing back to you for diagnosis? I would appreciate any info. I am unable to find a doctor or travel to California. My NP highly suspects DD, as do I. My symptoms match many you list. I have no known family with this same cluster of symptoms, but did grow up on an oil lease in the panhandle of Texas with exposure to crude oil/chemicals. I highly suspect this exposure to be significant in my disease process.
I am 62 and had been diagnosed with Fibromyalgia 22 years ago. I think I have Dercum's though with painful nodules the size of rice, peas and large size marbles in legs, bottom, stomach, under arms. Has anyone tried a cold lazer or infared sauna? Is there a site that tells about successful treatments - I will start the RAD diet and use all the suggestions on Dr Herbst treatment protocal for Lipedema, hoping this applies to Dercums. Any help would be great.
I strongly suspect that I have Dercum’s but am having difficulty finding a doctor who can diagnose and I cannot get in to you until July 1st. I’m still suffering major bodily changes, including losing 15 lbs in two months while I continue to get bigger and thicker with increased pain and developed lipomas just from getting blood drawn. It is as if a switch was thrown on in May after being on a high dose of synthroid for a couple of months. I was only recently informed that my hypothyroidism was caused by Hashimoto’s. I’ve had hypothyroidism for 19 years but went off of synthroid for a few years because it made me not feel good. Note that my fibromyalgia symptoms were much better off of synthroid and were significantly worse when I was back on synthroid . My Drs. convinced me to go back on it, but prescribed twice the dose that I used to be on. I wonder if a sudden flood of synthetic thyroid in someone with an autoimmune disease that attacks thyroid has caused this. Have you seen connections between hashimoto’s or other autoimmune diseases and Dercum’s and is an autoimmune response suspected as a cause? If so, have any of your patients tried low-dose naltrexone (LDN) to regulate their immune system response? If I can ever get diagnosed, I would be interested in discussing possibly trying LDN. My daughter had great success with her Crohn’s.
A Dermatologist should be able to diagnose you. It does seem in a good number of cases that the immune system is linked to Dercum's disease and we can diagnose this by examining the fat and lymphatics. I have had a few people try low dose naltrexone but have not really heard that it is effective. It may not hurt to try. I also like manual lymphatic drainage and other meds.
Any names of dermatologists in the midwest area that you are aware of who are familiar with RAD's and can diagnose? i contacted Dr. Hanke's office in Indianapolis (you mentioned his name in an article) and he said that he did not diagnose Dercum's. I'm in Illinois. I would still come to you to discuss treatment options. For peace of mind so I know that I'm not crazy and for work purposes, I would love to get a diagnosis asap. My newest... I woke up this morning with my lower armpits looking like a third of a softball sticking out. it just keeps progressing and the pain is getting worse, especially in my hips, wrists, and shoulders. I would appreciate any help pointing me in the right direction.
There are quite a few of us on the east coast near Philadelphia and Baltimore. Can you refer us to a few names in this area?
I'm so desperate, I was told I have fibromyalgia as well as degenerative disc disease, bulging discs, but can't get a Dercums diagnosis?
My doctor says that a dermatologist only deals with the skin and these lumps are 'under the skin'. There's no doctor that specializes in 'lipomas' or bumps 'under the skin'. I've had several very painful lipomas removed over the past couple of years and the doctor says that I can only be diagnosed with 'lipomas', perhaps doctors haven't heard of Dercum's in Camada? The physican and the surgeon doesn't believe that the lipomas are painful, they think that I'm making it up.
I mostly see posts on people with Dercum's that live outside Canada. Is there anyone else in canada (Newfoundland) that has painful lipomas and can't get a diagnosis?
Please send any info on diagnosing and living with dercums! I'm too embarrassed because I feel I brought this disease on by myself by gaining so much weight!
Dear Dr. Herbst,
I live in northern California, surprise no one here will acknowledge Dercums. I have had 2 on my right chest removed. Wish you could have biopsied them. I have been diagnosed with Thoracic Outlet Syndrome from the pain and numbness in my neck, back ans arm. I was on heparin injections but that seemed to make lypomas worse but helped with nerve pain. I am now on Trental, a blood thinner, and it really seems to help with the pain in both conditions. Dercums and TOS. The lypomas on my chest are coming back but seem slower since stopping heparin injections. info on tos heparin injections can be found on doctorellis.com. Can we clone you? Any idea of doctors in northern California? I live in Paradise. Hope this helps
Hi Dr Herbst,
I did see my GP yesterday for the lipedema, IBS and other issues. He said he knew what it was, but is in doubt that I have it. Which makes me think that he might be confusing it with lymphedema instead.
My doctor is working me up for antibody screening, vitamin D deficiency, and asbestos exposure (long story). I have been taking my chia seeds, almond milk, and other supplements for over 9 months. My nails, hair, and cuticles have no change. I told him I don't think I have been absorbing the nutrients and vitamins. So I got a blood work up. Referral to GI doctor.
The pain I have been complaining about on my back is a lipoma growing. My question- Is that normal for people with Lipedema? Also, is there a picture library where someone is tracking our images?
Desperate for a Doctor in South Carolina
Did you find a doc in SC ??
I'm currently looking in Rock Hill area.
Google : think about your troubles stella if you want the details..
Curious & hopeful for a response..
I am getting desperate to find a doctor who can help me. I have classic lipedema ( I think Stage III) and have been misdiagnosed for YEARS, told to "just lose weight", told that I was just not handling pain well, been dropped by a doctor because he couldn't help me, told to do things that made the problems much worse. I am now 62, in constant pain. Walking any small distance (like shopping) is so difficult, climbing stairs is close to impossible. I work full time and weekends, but am totally fatigued, having increased mobility & pain issues, and my quality of life is diminishing. I must conserve energy to just get through the day. I wrap my legs and use made-to-order compression farow wraps, but after use, my legs are so painful I can barely touch them or wear slacks. I had double knee replacement two years ago, have had and need surgery again for herniated discs and now the lipo is spreading to my arms. I am on Coumadin due to PFO in my heart and atrial fib. I need to find a doctor in the Philadelphia/New Jersey who can help, but not only is there no one covered by my medical insurance, but I’ve had to give most doctors copies of information I’ve gathered on Lipedema, just to try to get some help (they appear to just be guessing how to help!) I cannot afford to go outside my HMO network to find help and my HMO is completely unsympathetic. HELP!! I need some suggestions. I feel I am becoming more isolated and depressed.
Read your post. I am working with a doctor in wilmington delaware who has trained in lipedema wal surgery with dr. Stutz. He accepts insurance and is a vascular surgeon. If you join one of the private lippy fb groups, such as lipedema sisters usa or liposuction for lipedema, i will post when he is starting. He has scheduled his first lippy wal patient for next month.
Thank you, L murphy, for the heads up. Unfortunately, I am still on an HMO who doesn't cover outside of NJ. I would like to learn more about this, tho. Since my initial post, I became a patient of Dr. Herbst and have traveled to AZ twice for care, (although not covered by insurance). She is wonderful and my primary is working with her suggestions. Please feel free to contact me at firstname.lastname@example.org.
Hi Dr. Herbst,
I've not met you but we've had conversations in the past.
I lived in WA. but now live in Reno, NV. I have 2 questions for you.
1. Does Lipedema/Dercum's Disease have what could be referred to as "flares" It seems that I notice an increase in my leg size about every 5 years along with less strength and mobility. I was diagnosed around 2001. Was told I wouldn't be walking on my own within 5 years. It is 2013 and I use a cane or go-go scooter and I can still walk, much slower, with more pain in hip areas and less distance at a time. So does Dercum's have flares?
2. Does Dercum's affect iron levels at all? I've been anemic off and on most of my life. Oral iron isn't working. After extensive testing to find if there is a cause, they didn't find any. I've just started iron infusions (one every 2 weeks so far) and will know in about 2 weeks if it has helped. My red blood cells are smaller, weaker and few in number I've been told.
Last I wish there was something I could put on my scooter that said, this is Dercum's Disease .................I hate the looks from people and most look at you like if you would lose weight you could get out of that scooter. My assumption of course, but I think it's pretty accurate.
I've learned I'm more vain than I thought.
I was pretty "normal" until age 43.....then a total hysterectomy. Now I'm 60 and can completely understand how we can become more isolated and depressed. Even with support it's hard.
It's starting to effect more of my life and it makes me sad and lonely.
I'm located in the Central Virginia area and am desperate to find out for sure whether or not it is actually Dercums that has been absolutely destroying my life over the past year and a half. And if so, how I can go about doing whatever it might be to try to get some sort of relief. I have been told by two Dermatologists now that I "probably" and "more than likely" have it. However, the first one (a large and
well known teaching hospital) who gave me the "probably", also said there was no way to find out for sure and nothing they could do to help me anyway if it is what I have - and that I just needed to see a Pain Dr about it. However, I am already with a pain clinic for RA, Fibromyalgia and spine issues and they can't help me out with anything else if I don't have an actual DX. The next Dermatologist also thought it seemed to be Dercums, but left it that she would need to do more research first, so doesn't have a follow up scheduled with me until March of next year. I'm in complete misery and don't feel I can hang on until then - so I've started researching on my own to try to determine if I do actually even fit the criteria in the meantime. What has prompted my comment here now, is this question (that I havent been able to find an answer to) regarding Dercums having
FLARES or not? Whatever I have going on with me, while getting progressively worse overall, definitely seems to have flares and
"semi-remissions" of a sort - similar to the way my RA works. And the lumps and swellings move around and/or or come and go in the same spots - though there are a some deeper (and hardly visible but very painful and constricting ones) that seem here to stay. Also, during "flares" it will even affect my scalp, face, feet and hands and I sometimes gets redness or bruising as well (especially as a lump or swelling starts to recede) which one of the Drs said is NOT consistent with Dercums - although I've seen other information that would contradict that.... So, as you can see, I'm completely lost and confused here, which is why I am absolutely desperate for some real help and guidance! Please - ANY input appreciated!
A very fair doctrine furthermore excellent blog.
A lot of thanks for the great post C I’d fun reading it! That i really like this weblog.
It pains me terribly to read through these comments and see the stories of suffering, from lack of insurance to uninformed medical professionals and the overall frustration from not getting adequate care. I am glad that there are persons such as Dr. Herbst who do care and want to make a difference in the lives of persons with disorders that so many have NEVER heard of! It inspires me to attend medical school so that I can help persons in this situation. Maybe I am an idealist, but as a person living with peripheral lipedema (still undiagnosed), chronic pain, digestive issues and depression, I know how uncomfortable it feels, how the despair can overtake ones life. I am at a point where I would almost trade bologna sandwiches in exchange for offering services if I was a physician (and yes, I know I am a bit crazy ;-) )
Thanks for your post. I’ve been thinking about writing a very comparable post over the last couple of weeks, I’ll probably keep it short and sweet and link to this instead if that's cool
your work and wondering how you managed this blog so well. It’s so remarkable that I can't afford to not go through this valuable information whenever I surf the internet
Dr. Hearbst you dx my wife Tammi with dercums type 1 and type 2 five years ago. Tammi had obviously become much worse since your dx. My question is what are the symptoms of patients at the end of what seems to be the end. She has severe pressure on right side of chest, lower stomach area and back. She is eating less and in bed most of the time. Severe leg jerks and cramps. Thx Steve. I am trying to figure out a way to afford to take her to you for an appointment.
I am a 27 year old female that has not been diagnoses, but I strongly suspect I have Dercum's Disease. My mother was diagnosed by you in 2014 and I share all of the symptoms she experiences and more! She is a nurse practitioner and also agrees I have the disease. After having 2 surgeries, one month apart, for the removal of ovarian cysts/ovary/fallian tube, I began to notice increasing pain due to rapidly-developing lipomas. The pain ranges from 5 on a good day to 9 on a bad day. NSAIDs and Opioids barely take the edge off. In addition to the pain, I also have loss of coordination, vertigo, headaches, severe muscle weakness in my right arm and leg, extreme pain on the right side of my chest/ribs, myoclonus in all extremeties, burning and smarting sensations in all extremeties, numbness, fluid overload to the point I struggle to breath at times, as well as pelvic pain. I have been to 3 different doctors, all of whom believe the symptoms are psychosomatic. They continue to blame the pain on anxiety/depression, and won't work with me to get referrals to a specialist. I am a newly graduated registered nurse and have lost my job due to being unable to fulfill my essential job functions. This disease is affecting my life physically, emotionally, and financially, yet these doctors don't seem concerned. My mom is coming to see you for her yearly follow-up appointment in April. Is there any way that I could be seen then, too? I know you aren't taking new patients, but I figured I should at least try! If not, can you recommend any Physicians on the East coast? I live in Maine and saw that there are a few doctors listed in Boston that specialize in fat disorders, as well as a rheumatologist in Vermont.
Thank you, in advance. I just need hope and direction.
I am suffering too, I live in Vermont. I did receive diagnosis by going through hoops and seeing doctors who really have no idea, or inclination to have any idea, what they are talking about in regards to Dercum's/my health. I ended up diagnosed by a geneticist who researched the symptoms and onset and said I matched up.
My condition is rapidly worsening, it hurts to type this even, my arms are on fire and new lumps cropping up past my elbows now in the last week or two. I only found my first rib lump a year and 4 months ago and now they are everywhere.
Anyway I digress, the reason I am responding is I have been looking consistently for any medical help to slow this down or reverse it or even control the pain without opiates which I have thus far refused and have found no one here in Vermont. In fact I reached out today and found that the rheumatologist listed says she is not familiar with Dercum's Disease. If you hear different from Libman's office please let me know! Or if you find someone at all frankly, please.
Hello Dr. Herbst. I have had painful lumps all over my body for many years and have brought these to many doctors attention. My primary doc agreed to have a biopsy of a few of the painful lumps in 2011. These were lipomas I was told at the time "normal tissue" nothing to worry about, My health has progressively gotten worse since that biopsy. I have been diagnosed with hoshimotos, intercistial cystitis, chronic dry eye. I have protein c deficiency clotting disorder, high blood pressure, obstructive pulmonary desease, depression, anxiety, brain fog. I basically Feel pretty horrible most days. I have tried several diets. The most recent was a low carb, high protein diet, lost 43 lbs, but over the past 6 months have gained it back. I have been searching for something, a reason as to why I have all these problems. I finally found a link to your site and started reading. Finally I think I have a name for what is happening to me "Dercums desease" I printed some of this information and made an appointment with my primary who has seen the decline of my health, but had no answers. He read and totally agreed that it sounds like what I have. He said he would be willing to refer me wherever I should go for treatment, but other than you had no idea where to send me. I am located in Grand Rapids Michigan. Can you refer me to someone in Michigan or neighboring states or should I just make an appointment with your office and rob a bank to get the money to come see you. I am joking of course about the bank, but am really not in a financial situation to be able to afford the cost to go to Arizona. Although it seems that you are the only doctor I can see from my research that has a good knowledge of this desease. Please help me figure out what I should do. Thank you for your guidance.
Dr. Herbst. My doctor thinks I have dercums disease. I called you office a few days ago. I would like to talk to you about the disease if at all possible.
Hey Dr. Herbst! I heard about your program and Arizona university (TREAT) I am 23 and I have had lipomas since I was 16. I’ve had a few removed but it seems like out of no where they are growing in numbers. I probably have close to 100 now. I was a heavy drinker but quit almost 2 years ago. And I have been focusing on cleaning my diet up and also trying keto. I am in pretty good shape, and don’t understand why my body is producing them. I know my dad, sister and brother have them to do it could be the familial lipoma thing. But there’s gotta be some underlying problem to cause a body to create tumors isn’t there? I’d love any advice, treatment, or news on experiments your working on! Some of these lumps hurt, but I’m really just scared of how I’m starting to look. Any help would be so appreciated!
Dr.Herbst, I was able to see you and get diagnosed in 2009 with lipo-lymphedema, lipedema and Dercums. The Dercums has become more prominent and is now on my ribs to an extreme. It has made me feel as I’m having a heart attack and now am beginning to have trouble breathing. Any advice on what to do would be great.
Karen Herbst, a physician, educator and fat and lymphatic disease advocate